Tuesday, October 8, 2013

Our first hospital trip - thank you, FPIES :/

L could not move from this
position without being in excruciating pain

I am only writing this out in the event that another parent out there who has a child with MSPI or FPIES deals with this and doesn't know what it is!

L was doing pretty good with his food, so I decided to trial green beans this past week. I gave him three on Wednesday and didn't see any immediate reaction that day, so decided to give him three more on Thursday. He was fussy, but he also had teeth coming in, so we didn't think much of it. Fast forward to Saturday..

3 am - L wakes up SCREAMING. I mean, bloodcurdling screams. My first thought: teething or night terrors. L was fine as long as he was being held, but the second we put him down he screamed again. We were up from 3 - 5:30 - hubby and I took shifts (thank God for hubby!). L finally passed out again at 5:30 and I figured we were all set. I was very wrong!

The poor guy woke up at 9 crying again - this is not unusual, so I gave him some breakfast. Here's where I should have started getting worried: after eating a couple of bites, he did not want to walk. He just wanted to be held. Again, I figured: 2 year molars. And again: wrong.

I finally realized something was wrong when I sat down to talk with him and he came over to me and buried his head in my lap and kept standing. He was trying to poop. I figured maybe he just had a hard poop, but he kept crying, turning red, burying his head in my lap, trying to switch legs standing up, etc. After an hour and a half, I knew something was very wrong. He had passed a few very hard poops (sorry if TMI, but I'm assuming those reading are also worried parents, so you'll forgive me), but was unable to do any more. He was exhausted and seriously hurting.

Even taking him outside did not help

After trying for so long, he gave up and could only lay down on his side with no pressure on his belly. He couldn't walk - when he tried, he just fell and we had to hold him - he couldn't bend his legs above his waist at all. Holding him any other way caused him pain. I called his Dr and they told me to give him a warm bath so we did - which he tolerated until he took a nap.

After his nap, I got my hopes up, because he stood up in his crib. Not long after that, I tried giving him a simple smoothie to get something (anything) in his stomach, as he had refused all food and drink that day. He ended up projectile vomiting all of it up. He then was so lethargic and weak to the point where he couldn't even lift his own head - my husband had to hold his head up for him. He was pale, weak, limp, and staring into space. By this point, I knew we had to bring him in.

I should have brought him in sooner but I asked for advice from his Dr and others who told me he was probably just constipated and it would work its way out. We went to a wonderful smaller hospital, where I insisted they do an X-Ray, and check him out. The entire time in the hospital, he could only lay on Daddy's lap and watch everyone - this is so not like him it scared me. He would usually be trying to pull everything off of the walls, etc. They also drew blood and took urine just in case.

The X-Ray showed he was very constipated and they were able to give him a safe suppository which he didn't like, but it cleaned him out. This was excruciating for him and we couldn't believe the amount that he passed - all hard as a rock.

So in summary: no more green beans. Usually, L's bowel movements are every other day, and are usually soft. This was rock hard, and caused him so much pain it was unbearable to see. I am speaking with his GI about a safe suppository to keep on hand for him, just in case. I had to be very firm with the Doctors to get them to understand the gravity of the situation - the nurse who called me back yesterday told me it was just constipation (I don't know how they feel so brave to tell a mother something like that), but by the time I was done with her she was saying she would definitely talk with the Doctor and he would be calling me with some suggestions.

I'm sorry, but if your child is lethargic, projectile vomiting, and can't walk or move his legs and showing shock-like symptoms, you truly can't say it's just constipation. This was a reaction - albeit a very late one. We have seen many many reactions over the past (almost) 2 years, but this was unlike any other reaction we had ever seen - please learn from my mistakes: do NOT wait to bring in your child if you suspect some sort of reaction. Do NOT let nurses or Doctors with little to no training on GI problems belittle your concerns or insinuate that you're overreacting. You are your child's #1 advocate. There is nobody who knows them better than you. Do what's right and NEVER ignore your gut feeling!!

By the way, fast forward to the next day, L was playing, and laughing more, just a little weak. Today (Tuesday) he passed the rest of the hard stool then a bunch of soft. You wouldn't believe the difference! He has been playing, giggling, climbing, and happy again. Thank You, Lord!

So, moral of the story, Mamas: always listen to your gut instinct with those kiddos! :)